Sickle cell and education (II)

Last week, I started part one of this column on sickle cell and education.  Experts in the UK and USA, specialising in the area of heamotology, published a research titled, ‘Sickle Cell: School, health and safety.’ Below are more excerpts from the research and the conclusion.

Swimming: Young people with sickle cell disorder are advised not to become cold. This may happen when swimming in unheated pools or by delays in drying off afterwards. It is always important to listen to the views of parents and the young person about inclusion in activities such as swimming. One school made an arrangement with their local swimming pool to have the pool temperature increased when the class with the child with SCD was due to take part in a swimming session. This ensured inclusion of the young person in a valued school activity without making the young person feel separate from peers.

Infection: Young people with SCD may have a damaged or missing spleen (the organ that helps to fight infections). The school should enable safe storage and dispensing of any antibiotic drugs prescribed for the young person with sickle cell disorder.

Temperature: Avoid activities that require outdoor work in cold or damp conditions; avoid under-heating of classrooms, especially mobile classrooms; maintain good ventilation of study areas. Allow coats or warm clothing to be worn in class, and permit the child with SCD to stay inside at break in cold or wet and windy weather. Young people with SCD may become ill if they are too hot or too cold.

Schools should work with the young person to establish agreed warmer clothing for indoor use within school. Staff supervising breaks, should be instructed not to enforce this. One school was aware that its complement of rooms included mobile classrooms that readily became too hot or too cold. It used its timetabling system to ensure that classes with a child with sickle cell disorder were timetabled away from such unsuitable classrooms. This kept the young person with SCD safe, but did so without drawing attention to him as different from others.

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Individual health care plans: All young people with sickle cell should have an individual health care plan. One local area works with the local specialist sickle cell nurse counsellor, as well as the school nurse, the parents and the young person themselves, to draw up these plans. The plans are individual but cover as a minimum: preventive measures to keep the child well at school; arrangements for giving pain medication to the child; what constitutes an emergency and what to do; key contacts, especially the consultant who will be the key health professional caring for the child; and a list of school staff (including school secretaries, canteen staff, caretakers, not just teachers) who have attended a professional update on sickle cell). The plan is to be reviewed yearly and the list of staff who have received an update, checked against those the young person is likely to meet during their academic year.

Sickle cell in the curriculum means creating a positive school ethos and making the curriculum relevant to the pupils. The pattern of genetic inheritance for sickle cell is an integral part of the genetics part of the GCSE science curriculum. The Sickle Cell Society has produced guidance on how sickle cell can be incorporated into various key stages of the national curriculum.

Medication: A key part of the Individual Health Care Plan should include arrangements for giving medication, and agreed procedures for assessing the severity of the pain. The key is to listen to the young person. Where pain is mild or moderate a key aim should be to keep the young person in school, by combining pain medication with an opportunity for rest and time out in a safe environment so that they can return to lessons later in the day. A blanket policy on not administering drugs or on having a young person collected as an outcome of administering any medication will in effect be an exclusionary policy for the young person with a sickle cell disorder.

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Teacher awareness: All staff should be made aware of sickle cell. Some schools cover this using part of a teachers day. The staff need to know what to do if the child has a painful crisis, how to recognise signs and symptoms of a stroke in young people with SCD, and learn to listen to the child if the child says they are feeling unwell. Ensure there are robust systems for relaying this information when the child has a supply teacher, when they change class or when they change school.  Ensure the availability of a safe area for a pupil with SCD to recover and take time out from activities. They may be able to return to study later in the day.

Challenging discrimination: Ensure that SCD is discussed as part of Personal, Health and Social Education and make sure that other pupils are challenged on any discriminatory views.

Pain management: The aim is to strike a balance between responding appropriately to medical emergencies and maintaining an inclusive school environment where a pupil with sickle cell disorder is not constantly sent home for episodes of minor pain. Ask the specialist sickle cell nurse or hospital consultant if there is a pain scale suitable for use in getting the young person with sickle cell disorder to say how severe the pain they are in. There are scales in which a young person is shown drawings of a series of cartoon faces ranging from happy (no pain) to sad and crying (most pain). Such a scale could be included in the individual health care plan. The following scale is for illustrative purposes only and any scale used should have the approval of the young person’s hospital consultant.

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If you would like to read more about this study, click on:  If you would like to get in touch with me about this article or about Sickle cell, do get in touch: [email protected] and do visit my blog:

My book on sickle cell – How to live with sickle cell, is available for purchase on OkadaBooks and Amazon.

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